So.. today someone asked me how my head space was after my recent allergy incident. And I realised that maybe it’s time for people to understand what it’s like living with life threatening allergies. I don’t think I have ever really spoken freely about it. Yes I have covered what medically happens.. but what truly happens is harder to describe. I get upset that people don’t understand but perhaps they have never had the chance.
My health is an area that I can’t control and this goes against every fibre of my being. I hate not being in control. I like to know what’s coming and I’m a creature of routine. I like to work hard and achieve goals and to plan and prepare and fit as much life into each day as I can… and then there’s my allergies. I have to plan to be safe – and I do. I strategise how I am going to walk through a shopping centre – where is the food court.. how can I avoid it? I am on high alert grocery shopping – where is the spice isle? Will someone be doing tasters? Where is the fresh seafood located? If I need to go to the hardware shop.. how long will it take? The fumes make me vomit if I’m more than 15 minutes.. if I’m going out to dinner – Where is it? Is there anything on the menu that will trigger a reaction? Do I need to prewarn the restaurant? Is there anything I can eat? Should I risk it? My good friends are comfortable with me attending and not eating – people who don’t know me so well, feel uncomfortable. They want me to enjoy myself and be a part of their food partaking pleasure. They offer me all kinds of foods and treats – trying to be considerate.. but ultimately making me feel more uncomfortable. I know they mean well, and I know they want me to be happy.. but highlighting my lack of eating actually makes me feel uncomfortable.
My careful planning also has to cater for my inability to be in the sun for any length of time without protection. Driving means having a kaftan to put over exposed skin.. the constant supply of sunscreen (for sensitive skin).. my hat, my sunglasses – yes my eyes burn too. And then where is the activity? Is it outside? Will there be a place to sit that’s off the ground? In the shade? What’s the environment like – is it a known ant infested area? How far am I from the hospital? Will there be a place to store my Epi-pen out of heat and sun? Who will I be with? And then there’s inside my home..
I have to ensure that there are no food scraps left around my home – they encourage ants. If guests come to my home I have to make sure they do not bring any contaminated food – that means no food cooked near or in an environment where there has been spices. Those who live with me can’t cook certain foods while I’m home as the aromas of roasting meats and seafoods can cause violent vomiting. I’m not the easiest of house guests.. I can’t have my cutting board and cooking space contaminated with wheat, eggs, dairy, meat, seafood, tomato.. you get the picture. While I can touch some of the items – ingestion will cause me a reaction.. sometimes a rash (if I’m lucky) and sometimes anaphylaxis (if I’m not!). This is another area I struggle with – I want people to enjoy their time at my home, I want them to be able to eat yummy normal food.. but at the same time I want to be well. I have to trust that they are as careful with my health as I am. A knife that spreads my homemade hummus onto my rice cracker can not be used to spread onto someone’s bread. The double dip is contaminating the hummus. This makes me feel mean, and rude, but most people don’t realise how much it affects me. I can’t afford to be careless.
To maintain my health I spend more than $500 a month on medication – excluding health cover, doctors and specialist visits, ambulance services and epi-pens. I take 14 tablets, 1 puffer, and 1 spray every morning. I take 18 tablets at night. That’s the sum total when I am ‘well’. It’s a lot.. and then you get an ignorant person who says ‘you shouldn’t be on medication’ or ‘so much medication can’t be good for you’.. without this medication I wouldn’t be able to have a life at all. If I had the choice, in an ideal world, I wouldn’t have this much either – I’d rather buy pretty things or travel more or buy art supplies..but I don’t have that option.
Life with allergies is hard even when it’s going to plan. Life with allergies is harder when it isn’t going to plan. When something is not in your hands it’s so much harder to cope. I have to trust that everyone around me wants me to be safe. It hurts when people are careless or thoughtless – yes physically it hurts – my god it hurts. But it hurts my heart more. I try so hard to care and be kind and make as little trouble for others as possible. I eat away from others so they can have freedom, so they can relax. Yet ‘forgetting’ and bringing an allergy triggering food into what is meant to be a ‘safe’ place could result in my death. It breaks my heart to know that there are children and young people who can’t speak up for themselves or don’t know how to respond to an allergic reaction.. I know they get placed in these situations too. The excuse ‘oops’ or ‘I forgot’ isn’t good enough. It doesn’t cut it. I’m a forgiving person and I know accidents happen – I’d never hold a grudge to anyone who honestly didn’t know – I hold a grudge to those who do know and don’t care.
I try so hard to ensure I don’t bring nuts – I brush my teeth twice to ensure I don’t spread the nut aroma with those who are sensitive. This sounds simple and it is and I don’t think it an inconvenience if it means I’m keeping someone else safe. If someone who has to eat nuts regularly for fats and protein because they have a limited choice in diet can do this.. then so can everyone else. I don’t want this to sound like a complaint against the universe. I’m not angry that I have allergies – it’s something I can’t change. It’s part of who I am. But I want other people to understand the extent that I go through so that others can be enlightened and learn how much a careless action can affect a person’s life.
A careless act of bringing an allergy trigger into a ‘safe’ place can cause anaphylaxis. Yes – that much is obvious.. so most of you would know that anaphylaxis is life threatening. Big needles are given, the patient is taken to hospital – that’s where knowledge ends for most people. But as the patient.. they are taken to the resuscitation unit of the hospital. They are monitored for at least four hours. They have heart rate monitors on, they have ECGs or EKGs, they have blood tests, they are watched by a team of nurses and doctors. If all goes well the patient is able to go home. They will be given steroids for a few days – these will make them feel sick in the stomach, they’ll have no appetite. They will sleep for a whole day, the next day they might get up for a few hours. The day after.. they will be sore and lethargic. They will not be well enough to exercise for another week. It takes a patient six months to rebuild their immunity – that is if they have six months without another reaction.
I have had 4 reactions this summer. Only one has been caused by an ant. The others have occurred in ‘safe’ places by people bringing a trigger into those environments. My immunity is at rock bottom. How is my head space? Mostly I am a strong, resilient, and hopeful person. I know true beauty is in the hearts of those who care for me. And that gives me strength.
I have met so many beautiful souls who show compassion, understanding, and love. I have been surrounded by people who have helped me when I desperately needed help – some of these people have been strangers and some I have known a very long time. Many people don’t know how tough my life is because I don’t like to be in the spot light, I don’t want people to worry… and I appear calm during an attack.
I have lost count of how many times I’ve been in an ambulance, how many times I have used an Epi-pen.. I am calm because I need to be. Being calm allows me to breathe.. to get as much oxygen as I can. Being calm means that I can stay alive. It doesn’t mean that I am not scared, that I don’t worry if the ambulance will get there in time. I worry that I am scaring those around me. I worry so much. I worry about a lot. But I also know what to do, I also trust in our health care system. Just like I have to trust that those around me are not deliberately trying to cause me harm.
That’s how I deal with my lot in life. I have to believe that there’s goodness in everyone. I keep a gratitude journal to remind myself how lucky I am to be alive each day. I find the good, even if it’s hard. I have learnt that sharing, being kind, and helping others actually brings me more joy than anything else. I try to live my life the best that I can and I try to make life better for those around me.
I don’t need anyone else to save me – I can save myself..(and call an ambo to assist of course). But I’d really love it if people could assist in the prevention of anaphylaxis.
I dream that one day I’ll have the freedom to be safe..to feel safe.. to fly and be free.